Monday 21 November 2011

Daddy is a big, fat stinky poo head

It took me awhile to decide upon the name of this post. I may have included some expletives amongst my list of ideas and by 'some', I mean 'heaps'. The inequities between the mummy and the daddy STILL pisses me off sometimes. Raising a child is supposed to be a team effort- in most cases it isn't. There is a huge disparity in workload right from the beginning. I don't know a mummy alive who hasn't got a personal story that enforces that theory. Even if you forget about the nine months of being pregnant and the joys of childbirth, even once they're born the majority of men are pretty much useless.

This is a hot topic for me at the moment because over the last week I've had homicidal thoughts towards daddy, been a bit cross with daddy. The thing is, I'm happy (most of the time) to do everything but sometimes I need a break & this is where we run into trouble......

Last week I 'booked' a sleep in. I booked it on Monday morning because daddy doesn't work Sunday evenings. He asked me what time I wanted to wake up, I said at least 8am. I thought I'd made it clear however that I wanted to wake up naturally, just like he does every damn day. The night before I told him how I was really looking forward to, waking up slowly, stretching, rubbing my eyes and taking my sweet ass time. But all daddy heard was '8am'. So, at 803am, daddy and Max came trudging into the bedroom *sigh*. Because daddy only hears what daddy wants to hear, in this case '8am'.
*Disclaimer: I was still appreciative of the sleep in.

I dragged my sorry butt into the kitchen and started preparing Max's breakfast. It was at this time that daddy announced he was going for a nap. Getting up at 5am was exhausting work, he said. I won't repeat my exact response, but it was something like "my darling, I always get up at 5am and I don't have the luxury of a recovery snooze". To daddy's credit, he stayed awake.

Daddy now has a full-time job, which is great. For a few months, I was the sole income earner and it sucked. I worked crappy night shift hours, because it paid better. I barely slept because I hated missing out on time with Max. I also, did most of the work around the house, because it was 'all too much' for daddy. When daddy started working, I never expected him to do much to help me- hey I may be cranky but I'm not deluded. But, not only does he do sweet f--- all, he expects a ticker tape parade for the f--- all that he does do. That alone is enough to piss me off but thenhe criticizes my parenting.......

The hours that daddy works is 3pm until midnight. One of the perks of that, is that he has been able to deal with Max during our recent 'party time at 3am' problem. For that, I am grateful. The problem with those hours though, is that he isn't around for baby bedtime and that has been a NIGHTMARE lately. He is asleep in the morning, when I'm trying to get us organized for the day and entertain Max at the same time. All I want (and I've told him this), is for him to be awake for an hour at the most so that I can organize things. Then he can sleep, all damn day for all I care. Last week, Max was teething, his moods were revolting AND he was clingy. Daddy could hear all the commotion, but did he ever get up to help?
**Disclaimer: I know that most mummy's have to do the morning rush alone because daddy has gone to work. My question is this- would mummy be annoyed if she went into the bedroom and daddy said "having trouble with him this morning are ya?"

Last Thursday afternoon, I snapped. I was such a frazzled, exhausted mess in the morning, that daddy took the afternoon off work to give me a break. Lovely. I was so appreciative, even though I secretly suspect that he just didn't want to work.

What should have been a relaxing time, was totally revolting. Max started screaming his head off & daddy tried to settle him. After a while of nothing working, I tried to gently tell him the strategies that I've found effective. Got my head bitten off for interfering.

So, I sat back on the couch and listened as the screaming continued, for what seemed like hours. I thought that this would prove to daddy, just how difficult Max has been lately.....nope. It's apparently my fault, for not having him in a strict routine (how do you propose I do that, when we have a medical/therapy appointment nearly every day???)

So, I kept sitting, trying to ignore the chaos in the other room. I tried to telepathically send him the message, "he's teething and you know that, panadol, panadol, panadol".

Eventually, I couldn't take it anymore and went to get the panadol myself. We'd run out of the old stuff, so I'd bought a new bottle, that just so happened to be a different brand. And guess what? Daddy was furious that I'd changed panadol brands without telling him. Daddy was also angry that I hadn't intervened with the panadol earlier......excuse me? I thought you didn't want me interfering? I'm always trying to explain to him, the therapy exercises we are doing etc. On a good day he feigns interest for awhile, most of the time, he doesn't bother. But apparently the panadol brand is something I should've communicated.

I'm exhausted at the moment. I'm drained. I'm overwhelmed. I'm so stinking tired. And I cracked it. I was literally paralyzed by the anger. I couldn't scream and I couldn't cry, I was just too damn angry. This would be the first time in Max's life that I felt absolutely no guilt about walking away. I went straight to bed (it was 4pm) and I slept all night. I left daddy to deal with everything.

You'd think he would've learnt his lesson about pissing off a sleep deprived, frazzled mummy after that. But noooooo. A few days later, he picked me up after my night shift and declared that he was going to bed first. Turns out that he stayed up most of the night playing playstation and drinking bourbon........

Daddies totally suck, ass. Today daddy left his tracksuit pants on the bathroom floor. I used them as a bathmat.


How on earth did you reach daddies movie guide Max??




Stop Max. No. Don't figure out how to use the remote control. It'll completely destroy your father......

Saturday 19 November 2011

Lunch today will be roast beef with a side dish of vestibular stimulation

I'll be the first one to admit that I'm struggling a bit with Max's new 'zest' for life. Please don't get me wrong, I am so happy that we are finally doing a program that is helping him. It's just that it literally happened overnight. Last Monday, Max was fairly passive and vague when I started the Snowdrop Program. Last Tuesday, Max was hyperactive, inquisitive and demanding. I love seeing him so alert, but the sudden change in his personality requires sudden parenting adjustments. He's also teething, so we've had lots of screaming and bugger all sleep. Getting him to sleep at bedtime has become a nightmare. I'm starting to feel as though I'm drowning.

For us, a fairly typical day (lately) starts at 2am, when Max decides that he's had enough sleep and is ready to start the day. It takes around 2 hours to get him back to sleep. At 5am, he's awake again and the day begins. I'm now in the process of changing his sleeping routines and teaching him to self settle. Yes, I should've established this long ago, but the sleeping routine has been kinda low on the list of priorities. You see, one of the issues I have, is that, our therapy schedule is so intense that I often forget the 'normal' baby stuff. (ie oh bugger, when did he last have a bottle???)

On an average day, I complete our Snowdrop program with him twice a day- morning and evening. That involves- deep pressure massage, brushing, tactile and vestibular stimulation exercises, as well as exercises for his visual tracking. We also do some constraint therapy- holding down 'lefty' to force 'righty' to grab the toy. A big component of the program is giving Max lots of exuberant praise. This releases dopamine and that helps to 'cement' the new neural pathways I am helping him develop.




(This is our play/therapy area)

Incorporating different sensory experiences into his day, is a big part of the program.


(This is the 'sensory' box that I've made up for him)



Most days, I make him a 'salad' for lunch. He loves the veggies plus it's another way of incorporating different textures and sensations. The choice of food is important too. Because of the damage to his brain, he is extremely prone to constipation. He also struggles with anemia, so including iron in his diet is really important (and iron exacerbates constipation). Zinc and Omega 3 are both really important for brain development, so I make sure to include that. Plus, there's all the usual baby nutritional needs like protein etc etc



(I've just started putting all of his favourite toys in one box as a problem solving exercise. I call it the 'for the love of god can you please entertain yourself for 5 minutes' box)


Throughout the day, I sing him lots of nursery rhymes. This is to help his language development- there's something about the rhyming that benefits language acquisition (I can't remember the proper explanation!!). I also talk and talk and talk to him, just as if I'm talking to another adult. I pause to await his response as if we are having a conversation.

Lots of kids who've had strokes, struggle with language acquisition and exposure to different languages is extremely beneficial. I purchased some baby sign DVDs that we've recently started watching. I'm a bit annoyed though, that the signs they teach are pretty useless. Yes, he can sign 'stars' but what is the bloody point of that?? He's in bed long before the stars even come out. I'd kind of hoped for something a bit more useful like 'hungry' or 'pain'. Ah well.

I also have some Italian flashcards on my iPhone that we go through from time to time. It amazes me how much he loves them.

We also read stories every night.
We read the same few stories over and over again, as this is the best way for him to acquire language. It's really hard to motivate myself to read the same stories, so I add different sound effects and accents. When I've totally had enough, we change books.

Then, there's the music.....lots and lots of music. Because, music activates both hemispheres of the brain, it is excellent in helping him learn new information and skills. Max LOVES music. He likes Ella Fitzgerald, Louis Armstrong and old school Jazz. He likes songs from musical theatre. He loves his playschool CD. He's also pretty partial to some hard core techno music. And Mozart..... he adores Mozart. As soon as the opening strains of the Concerto for Piano and Orchestra begins, he blisses out.

There's also the physiotherapy and occupational therapy that he needs every day. If I didn't do them, his muscles can easily become rigid and his joints get stiff.

I try so hard to strike a balance between therapy and relaxation but it's tough. Luckily, I've figured out ways to make things most things fun- a few fart noises here and there works wonders. I have a very strict rule that we MUST have at least one good belly laugh each day. I think the twinkle in his eyes and his killer smile, speaks volumes.




Exhibit A




Exhibit B

I enjoy every second that I spend with Max- ok that's not entirely true at 2am. But, at the same time, I'm so damn tired. I recently got some advice that really hit home "this journey is a marathon, not a sprint".


At this stage, I'm not quite sure exactly how to put this into practice.




The shuttlecock was meant to be a tactile toy. Apparently it also makes a pretty good pacifier ;-)


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Friday 18 November 2011

A Joyous Birth- Part 1

One of my best friends has JUST given birth to a beautiful baby girl. I mean literally JUST. All I know at this stage is that she's had the baby, I don't even know her name or weight yet. The baby was delivered via caesarean and I'll admit it- I'm a tad jealous. I wish I'd had a caesarean. I'm still a bit traumatized by Max's birth. I'm not traumatized in a Vietnam War style screaming in my sleep, whilst drowning in sweat kinda way. But I'm still traumatized, albeit on a somewhat milder level. Now, we mummies LOVE a gruesome birth story. I read heaps of them after Max's birth, trying to find one that was worse than mine. I only found one (and quite frankly, it was comparable) I haven't wanted to relive my experience by writing about it but now I'm thinking it might be cathartic. I warn you now- it ain't pretty but I'll try my best to limit the graphic descriptions. So.....it is my pleasure to bring to you *drum roll* *snare drum*...."The Lion King meets Alien vs Predator" (aka. The story of Max's birth).

It was around 0132am when my waters broke. And boy did they break! It made Niagra Falls look puny & I swear that I saw the 'maid on the mist' chug past. It woke me from my sleep. I thought I was having one of those dreams where you're on the toilet, then you wake up and you're doing a wee. I ran to the bathroom, Rob knew instantly what had happened, because I NEVER run. I certainly never run at 132am either. I thought that if I sat on the loo long enough, the gush would slow to a trickle- it didn't. Rob bought my bathers to me, somehow thinking that it would help- cute. When I hobbled out to the car, I found that the one thing that Rob remembered from childbirth Ed was "amniotic fluid destroys car seats". He made me sit on a big stack of towels.

On the way to the hospital, I felt a quiet sense of calm. It was finally happening. The 'when is it going to happen?' was over. I tried to stay clear headed and focussed.

Try hobbling into an Emergency Department with your thighs squished together, so that you don't leak buckets of fluid everywhere. I felt like a princess. The delightfully aging and bitter
night nurse in ED gave me a stack of pillow cases, "stick these in your pants". Nice.

I thought that all birthing rooms were pretty similar, until I spoke with other mums afterwards. Ours was horrid. It was so white, sterile and clinical. There was nothing 'homely' or relaxing about it. It was something out of a 1950's horror movie, or at least that's how it felt at the time.

The next thing that happened, pissed me off, more then anything else. A doctor was checking how dilated my cervix was (joyous). Afterwards, she casually told me that I was 2cm dilated AND she'd stuck an electrode to Max's head to monitor his heartbeat. From that point on, I was confined to the bed. I wasn't annoyed that she'd done it. I was annoyed that she'd done it without telling me. I would've loved a few minutes of walking around time to go to the toilet. The bed was small, hard and ridiculously uncomfortable.

The Syntocinon (labour inducing) drip started shortly after 4am. My sister, the midwife sent me a text message saying that I could have an epidural before the infusion started. I considered waiting a little while but the big giant sook inside me opted for the epidural straight away.

By 7am, I could feel the contractions starting. A new nurse came on duty and while she was lovely, she was a 'graduate nurse' (ie very junior). At this stage, I was attached to far more machines than I'd imagined- 6 of them in total. My tailbone was already hurting from the hideous bed.

By 9am, the contractions were getting stronger and more painful. Yep, more painful, despite the epidural. Since the nurse didn't seemed concerned, I figured it was normal to still have some pain. When the nurse in charge came to relieve the grad nurse for morning tea, she was shocked to see how much pain I was in. She called the anesthetist back to review me.

And that is Part 1 of the story, stay tuned for the next installment. Coming soon.....


* Disclaimer: For the purpose of this story, I'm only talking about birth stories where both Mum and bubs come out alive and well. Suffice to say, nothing could be worse than mum or bubs dying in childbirth. It's a tragedy I cant even comprehend.


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Tuesday 15 November 2011

Slippery Little Sucker

My baby had a stroke and it happened when he was only 10 weeks old. Do you know how common it is for babies and children to have strokes? I can't be bothered looking up the stats, so I'll just say it's pretty darn tootin common. Some days I'm ok with that and other days I wanna scream with rage. I'm learning, that it's ok to have moments of sadness and anger. It doesn't mean that I'm ungrateful or that I forget about people worse off than me (far from it). It's because someone recently said to me "no one can be positive all the time" and then I realized that it's ok to grieve .

No one actually imagines themselves as the parent of a disabled child. When I was pregnant, I didn't brush up on my knowledge of Neuro-developmental rehabilitation strategies before the birth. Back then, I googled normal stuff like 'painfree labour', 'how much does labour really hurt?' and 'how will i know if I'm in labour?' because my child was going to be perfectly healthy (and I was really scared of labour). Back then, I felt so connected to other pregnant friends. We compared annoying pregnancy symptoms, freaky cravings and moaned about the daddies drinking too much bourbon. I still moan about daddy and his bourbon, but now I feel alone.

Other mummy's can spend time looking up cute baby outfits and accessories. I spend my time researching rehabilitation strategies. I'm trying to implement the optimal diet for his brain development. I'm trying to figure out the correct 'therapy vs relaxation ratio' for us. At the moment, I'm trying to understand the role of vestibular stimulation/destimulation in Neuro-developmental rehab. I tell you, it's really interesting stuff and you should read more about it. What's that?? Neuro-development isnt 'your thing?'. It wasn't my thing either, until about 5 months ago.

We've been kicking some major goals since we have started doing the Snowdrop Program with Max. He's now being stimulated in the areas of his brain that need it the most. His language has exploded, he is starting to become aware of Mr Righty, he is no longer 'spaced out' (he has quite a little attitude) and his feet are getting ridiculously clever.




Max drives his 'car' with his feet.

Max has all but given up on rolling, now that he realizes he has two perfectly functional feet to do the work instead. Yesterday, I was teasingly waving a toy in front of him to work on his visual tracking and reaching skills. After a few seconds he picked up a piece of paper from the floor with his feet, triumphantly passed it up to his hands and proceeded to munch away on it. "Stick THAT in your rehab pipe and smoke it mum!!"

Yesterday, we sat down to watch Max's 'baby signing' DVDs. He tried to mimic the kids doing sign language on the video with his hands and his feet. It was so stinkin cute.

He can move a toy closer to himself by picking up the rug between his toes and dragging it closer. cheeky, little, ragbag . Today, he completely freaked out the pathology nurse at the hospital by grabbing her shirt and pulling her closer- with his feet.

Do you know how difficult it's starting to get having a baby with a new found stubborn attitude and three limbs that are capable of grabbing things they aren't meant to grab? It's so bizarre. It's so amazing. And it makes me so darn proud.

I wonder when Einsteins mother realized that her son was a genius?




Houston! We have a dribble problem.





I really like this kid, can we keep him??


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Wednesday 9 November 2011

Little miracles

We've had a lot of physio and OT programs over the last 5 months. In terms of Max's overall gross motor development, he's only a little bit behind. His private physio Jess has been a godsend. Because of her, we've been able to keep him 'pretty much' on track and by doing lots of stretches, we've stopped his muscle tightness from getting worse. Before we met Jess, his right shoulder was so stiff that we couldn't stretch it above his head. Nowadays, it's only a little bit tight and he doesn't tense up or grimace when we stretch him. One exercise however, that we have worked on with him, ever since the stroke, has never shown even the slightest improvement. He has never tried to reach for anything with his right arm.




You see this penguin? I flippin' HATE this penguin. It has hung on the right hand side, above Max's head, on his play gym, for the last 5 months. When the plastic bubble on the penguins tummy spins, it sings a little song. Nifty ay? Every day for a few months, we sat with Max and the damn penguin, trying everything we could to entice his right arm to reach for it. At one stage, the right hand side of his play gym, looked like it was going to the Mardi Gras. He never bloody reached for the penguin, a few times he'd knock it accidentally, but that was it.

As he has grown older, good ol' mister lefty has become increasingly cunning at procuring toys placed on his right side. Recently, even his feet have been getting sneaky and helping to compensate for mr righty. This morning, Max picked up the slinky with his foot and then passed it up to his hands. It's cute and pretty darn tootin' clever but frustrating as hell, when we're trying to get mr righty to pull his own weight.




(yes darling, you are very clever)

A few weeks ago, his OT told us that Mr Righty would never initiate the process of reaching. She is actually writing her thesis on the topic "hemi-kids will never reach for things with their affected arm". Then why the bloody hell have you had us trying to do this?? We've used bright toys, noisy toys, toys that light up (etc etc) to entice mr righty to get moving, with no improvement. The OT also told me that day, that Mr Righty would always be a 'helper' hand. Our new goal then, has been to teach Mr Righty how to 'help' Lefty in some ways. I'm pretty impressed, at how quickly Mr Righty is improving with his helping ability. Righty is now (sometimes) able to hold a toy, whilst lefty presses the buttons. Righty now helps out occasionally when something needs to be held with two hands.




Righty tends to be in a fist though, so often isn't all that helpful.

A few posts ago, I wrote about my recent discussions with Andrew Brereton from the Snowdrop Program in the UK. I don't know how to do links when I'm writing this on iPhone, so I can't link you back to that post. (It was called 'That boy needs therapy', if you wanna know more about it). We received Max's program late last week. I practiced it with him over the weekend and started it officially 3 days ago.

After those first few practice days, I noticed it. Tiny, little signs that Mr Righty was waking up. Tiny twinges of his fingers so slight that I wasn't sure if I was just imagining it. When I feed Max, I placed his bowl of food and water on the right side if I need to go and grab something. That way, I know that he won't be able to get it and pour cereal on his head (haha lefty, you can't reach that far). I did the same thing today but BAM, I turned around and his water bottle had been knocked over. Hmmmm, it couldn't have been righty.....could it?

Later on today, we had a session with our gorgeous physio Jess. Jess presented his favourite bells, (as she always does) to his right hand. And guess what? Mr Lefty didn't lean across and interfere this time. He darn well reached out with his right hand and grabbed them. He did it three times, we had to make sure that it wasn't a fluke.

We still have a long way to go and I'm not sure what Max's future will entail. But that doesn't bother me right now. My boy, is starting to achieve things that 'the experts' had said wasn't possible. That makes me feel pretty smug.

Today, I cried tears of joy for the first time in months. I don't know how many minutes or hours I've spent, staring at that little arm, silently begging it to reach for the toy. Today, a little miracle occurred and I can't begin to tell you how good that feels. Max is rapidly changing from a spaced out and vague little guy to a boy who is hyperactive, engaging and cheeky. Andrew and the Snowdrop Program are truly amazing.

This evening, my mother summed things up perfectly-
"Mummy's little man is coming back".




(My mother and Max)

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Tuesday 1 November 2011

My little spunk

Max and I have been doing so much lately, here are our most recent photos.....




Doing physio in the park. The boy loves grass!!




Grass inspection.




He wasn't too sure about the swimming pool, the first time around. He was a baby on the edge!!




But he was totally pooped afterwards!!




The next day, he LOVED the pool!!




Some more pool lovin'




Just one more....




I looked up and he was using Mr Righty to feed himself. What the??




Thanks Aunty Tara for making me a texture blanket.




Is there anything sweeter than a sleeping baby??




Thanks for my new jammies Nana!!




Almost able to sit up by myself!




Almost...



And this is how he lands ;-)




Max's first bowl of spaghetti bolognese. Hesitant at the beginning but LOVED it by the end ;-)




Remarkable adaptability. Using his right foot to start his car.




Remarkable adaptability part 2. Using his foot to pick up this rattle.




This is what happens when he drops his orange. Um. Yeah. He really likes oranges.




I'm feeling pretty pleased with myself after doing a mega baby veggie cook up.




Nom nom, chicken drumstick




I love watching him sleep. Yes. I'm a bit creepy like that.




Max turned 7 months old last week. I can't believe he used to be this small.




Hope you all have a great day!